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Madeleine Kangsen Scammell Boston University School of Public Health

Department of Environmental Health

WETP / SBRPNIEHS

April 3, 2008

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Community Outreach Core Goals:

Work with community organizations and members to create a reciprocal understanding of how scientific research is related to their needs and interests, and conversely show how those needs and interests relate to goals of scientific research;

Increase the awareness and utility of the research done at this and other Superfund Basic Research Programs for the general public, professionals and community organizations.

• Increase public awareness of environmental health sciences and their applications, particularly with respect to the reproductive

and developmental effects of chemicals in the environment.

• Establish mechanisms for creating short and long-termcommunity-researcher relationships.

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Boston Consensus Conference

Objectives:• Educate the general public and stakeholders about

biomonitoring, and related ethical, legal, social and scientific issues.

• Gather input on the topic of biomonitoring from informed laypeople and learn from their unique perspectives.

Funding:National Institutes of Environmental Health (NIEHS)

– Communications and Ethics– Outreach and Translation,

Superfund Basic Research Program

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Community-Scientist Meetings

Health and Environment Assistance Resources Database www.HEAR-db.org

“Ask the Researcher”http://busbrp.org/ask.html

User-Generated Content Community Environmental Health Mapping

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Consensus Conferences

• Danish Board of Technology - Parliament– Argentina, Australia, Belgium, Canada, Israel,

Japan, New Zealand, South Korea

• Participatory Technology Assessment (pTA)– European Citizens’ Deliberation method

(Nine European countries)

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Why Biomonitoring?

• Scientific complexity• Issues of controversy• Pending legislation

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Steering Committee

Lois Adams, EPA Region 1George Annas, JD, MPH, Boston University School of

Public HealthTom Burke, PhD, MPH, Johns Hopkins Bloomberg School

of Public HealthDavid Carpenter, MD, University at Albany School of

Public HealthHoward Frumkin, MD, DrPH, National Center for

Environmental Health, Agency for Toxic Substances and Disease Registry

Carol Henry, PhD, DABT, American Chemistry CouncilTed Schettler, MD, MPH, Science and Environmental

Health Network

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Assembling the lay panelPanel of 15

(actual number)GenderMale 50 7Female 50 8Household Income< 15,000 20 315 – 45,000 30 546 – 74,000 20 3> 75,000 30 4EthnicityWhite 55 8Black 25 4Asian 8 1Hispanic 14 2Age18 – 34 47 735 – 54 36 555 – 74 17 3

City of Boston (approx. %)

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> 100 responses

85 Questionnaires returned

~ 20 Interviews

Final 15: Teacher, great great grand- mother, truck driver, detention center staff, singer, actor …

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First weekend

Expert Presentations• Intro to toxicology, epidemiology, and public health• Intro to biomonitoring

• Working definition of “consensus”• Building trust

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Second weekend

Expert Presentations• Larry Needham, CDC: NHANES biomonitoring

surveillance program• Amy Kyle, UC Berkeley: CA legislation

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Lay Panel Questions

• Are there examples of corporations that have been held accountable or that have changed their behavior based on the results of biomonitoring?

• How could someone who participated in a biomonitoring surveillance program experience discrimination based on test results?

• How might biomonitoring results get translated into action and policy?

• What did California do around biomonitoring education and awareness?

• What are some perspectives on who should sit on the oversight boards of biomonitoring surveillance programs?

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Third (final) weekend

Saturday- Expert presentations

Sunday- Deliberation and writing

Monday- Presentation of consensus statement

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Expert Panel (morning)

Rachel Morello-Frosch, PhD, MPH, Brown University School of Medicine Department of Community Health, and the Center for Environmental Studies

Julia Brody, PhD, Executive Director, Silent Spring InstituteEthics, confidentiality and disclosure; and responsible surveillance programs

Patricia Roche, JD, Boston University School of Public Health, Department of Health, Law, Ethics and Human Rights Ethics, confidentiality and disclosure

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Expert Panel (afternoon)Roy Petre, Senior Policy Analyst, Center for Environmental

Health, Massachusetts Department of Public Health Ethics, confidentiality and disclosure; responsible surveillance programs; education and communication on biomonitoring; and public policy, legislation, and regulations

Carol Henry, PhD, DABT, Vice President, Industry Performance Programs, American Chemistry CouncilResponsible surveillance programs; and corporate/government responsibility and accountability

Ted Schettler, MD, MPH, Science Director, Science and Environmental Health NetworkResponsible surveillance programs; and corporate/ government responsibility and accountability

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Consensus Conference: Presentation of findings

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Consensus Statement

• Establishing responsible surveillance programs

• Using biomonitoring data to influence corporate and government behavior

• Educating the general public about biomonitoring

• Addressing the issues of ethics, confidentiality and disclosure

• Thoughts on public policy

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Establishing Responsible Surveillance Programs

• State-based programs useful in addition to federal program

• Oversight boards should be composed of different stakeholder groups, including affected communities

• Concern that communities or individuals could be stigmatized by results

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Using Biomonitoring Data to Influence Corporate and Government Behavior

• Biomonitoring data can be used to stimulate green chemistry and green companies

• Treat increasing trends in chemical exposure in a precautionary manner that seeks to reduce or eliminate exposure

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Educating the General Public About Biomonitoring

• Key to achieving broad participation in biomonitoring programs

• Participation can be a point of entry into the health care system

• Information conveyed should include what is known and not known about cause and effect of exposure

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Addressing Issues of Ethics, Confidentiality, and Disclosure

• Participants should be able to decide whether or not to receive personal results, “Right to know”

• With reporting, important to include action steps for reducing exposure where available

• Biomonitoring data should be statutorily exempted (like genetic testing) from being transmitted or shared with employers, insurers or others as part of the medical history

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Conclusions

Value of diverse experiences

Lay people can understand complex information and make useful recommendations

A successful model for “mutual education”

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"I think this panel has shown, to some degree of surprise to the

scientific community, that the public can really understand the

issues. This panel has moved biomonitoring forward.”

Tom Burke, Johns Hopkins Bloomberg School of Public Health, Steering Committee member and NAS panel chair

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"I'm very pleased with your comments on innovation in green chemistry because innovation for

the industry is really the driving force for being successful…We will take your report and really try and

incorporate and integrate it into future actions."

Carol Henry, American Chemistry Council, Steering Committee member

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"This is a good way to include the voices of 'average folks' and

their uniquely relevant experiences in the policymaking

and public education process."

Panel member

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Further Applications of “Consensus Conference” Model

21st Century Nanotechnology Research and Development Act (Dec. 3, 2003):

Requires… “public discussions, through mechanisms such as citizens’ panels, consensus conferences and educational events.”

National Science Foundation: Human enhancement technologies

Arizona, California, Colorado, New Hampshire, North Carolina, Wisconsin

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Acknowledgements

• Members of the lay panel

• BU SPH Team: Jessica Nelson, Raphael Adamek, Traci Bethea, Tom Webster, David Ozonoff,

• Kagan Associates, LLC

• Steering Committee members

• Expert panel members

• Ned Crosby, Patrick Hamlett, Dick Sclove

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www.biomonitoring06.org